Migraine with aura
I am 54 years old and experienced my first migraine when I was 25. My doctor at the time put me on Prozac. He told me that it was an "off label" use of the medication. I was used Prozac until about three months ago. I am now taking Duloxetine for anxiety. Nothing for migraine. The reason I am not taking anything is because I stopping going to my Neurologist, the PA there really offended me. One of my biggest concerns with migraines are the aura before. Although I know what it is, it really makes me nervous and freaks me out. I was telling this to the PA at the neurologist office and was close to crying. Her was of consoling me was to tell me about people that draw pictures of there "aura" and sell them and how aura is similar to some aspect of Alice in Wonderland syndrome. I was so angry. I felt like she was making fun of my situation instead of taking my fear of the aura seriously. I stopped going there and made a complaint. Has anyone experienced this? Also, what other types of medical providers can I go to?
ruthiem74 So many important questions you have raised here. I'm so glad you are with us. I'm your age and have been living with chronic migraine for decades. I will do my best to address the points and questions you have raised:
1) Antidepressants/anxiety meds are among a number of medications that have found an off-label use for people with migraine. This article explains how they work in the brain to prevent migraine attacks. There are many other medications like this. Botox, originally created for cosmetic purposes, was found to help prevent migraine. Topamax, originally designed to help prevent seizures, was found to prevent migraine as well. In more recent years, more research and development was poured into the migraine field and as a result- migraine-specific medications were created. These include Triptans - things like maxalt, relpax, imitrex - and are primarily used as rescue medications (to be taken at the first sign of an attack).
More recently, a new class of drugs was released called CGRPs. These include both rescue and preventative options and are available in various formulations including pills that can be taken daily, or once monthly self-injections, and in-patient infusions. A number of people have had significant success with these drugs.
2) Alice in Wonderland Syndrome (AIWS) is a very real condition that some people with migraine experience. In a nutshell, it is an experience in which patients feel they, or their surroundings, are either larger or smaller than they actually are. It can be very disorienting and troubling.
3) Where to get proper care for migraine? I'm so sorry you had a rough experience in which you felt you were not properly heard or seen. This happens far too frequently in the world of migraine. We encourage people who are living with frequent migraine to pursue evaluation and treatment with a migraine specialist. These are doctors (frequently neurologists) who have received additional specialized training in the complex neurological condition that is migraine. There is an unfortunate shortage of these types of doctors. We have a couple of resources to help you find one near you: https://headaches.org/resources/healthcare-provider-finder/. And: https://americanmigrainefoundation.org/find-a-doctor/. However, we encourage you to do your own research- using google- seek "migraine specialist" and then look for good reviews. When you actually make your appointment, we recommend you do a careful evaluation of the practice to ensure it's a good fit for you.
I know I've given you quite a lot of information and resources to review and think about, Ruth. I hope I haven't overwhelmed you. Please know we are here to provide you with support and care. We are here for you so please let us know of any questions or needs you have as you continue along in your journey. You are not alone in this. Sending you tender care and compassion. Warmly - Holly (team member)
